Wednesday, January 09, 2008

Privacy law freezes health research in British Columbia

The Vancouver Sun is reporting that recent amendments to BC's privacy laws are making it difficult for researchers to recruit participants:

Privacy law freezes Health research

Numerous B.C. health studies are not proceeding, languishing on hold or facing long delays because privacy legislation prevents researchers from actively recruiting participants.

A sample of taxpayer-funded studies actually or potentially affected by the legislation include ones on Parkinson's disease, back injuries, prostate cancer, breast cancer, ovarian cancer, multiple myeloma, and the quality of life and health-care needs of childhood cancer survivors.

Scientists say the problem is a 2003 amendment to the B.C. Freedom of Information and Protection of Privacy Act prohibiting government from releasing information to scientists for the purpose of contacting individuals about participating in research.

Previously, the legislation allowed the government to disclose contact information to research scientists, without the consent of individuals, as long as confidentiality was protected.

The reasons for the amendment are not clear, but prior to 2003, scientists were allowed to collect a random sample of names from data banks such as the Medical Services Plan (MSP) registry and election lists to recruit control subjects for studies.

Medical studies have yielded important findings and led to major shifts in human behaviour, such as smoking cessation, more exercise and dietary changes....

1 comment:

Seva Batkin said...

I am not sure that the article is exactly right that there is absolutely no information about why those amendments were passed. A cursory search through the hansard revealed the following comments by Hon. S. Santori during the first and second readings of the Bill (Bill 13 - Freedom of Information and Protection of Privacy Amendment Act, 2003)

First reading:
It will clarify the requirements for the use of research agreements under the act, clarify the requirements regarding notification for the indirect collection of personal information, add a public body to the definition of a local government body and refine the definition of an educational body, and ensure the protection of solicitor-client privilege for records provided to the information and privacy commissioner.

Second Reading:
Fourth, the bill clarifies that researchers cannot use personal information from a public body for the sole purpose of contacting prospective research subjects. This change will increase privacy protection for individuals in an area where the information is often very sensitive and will have limited impact on researchers.

Outside of these comments, however, the discussion focused solely on the application of the Bill to privatized services.

It is interesting to note that while the Minister said that information cannot be disclosed for the "sole purpose of contacting prospective research subjects", the language of the act in fact says that condition of disclosure is that information is not used for this purpose.

35 A public body may disclose personal information or may cause personal information in its custody or under its control to be disclosed for a research purpose, including statistical research, only if

(a.1) the information is disclosed on condition that it not be used for the purpose of contacting a person to participate in the research,

Thus, even if contacting individuals is only one of the purposes for disclosure, it is still prohibited.